Jack Jensen's Blog: Pediatrician Appt Today

Tuesday, June 3, 2008

Pediatrician Appt Today

Just a quick update. Jack did GREAT at the pediatrician today. He's 3rd percentile for weight and 75th percentile for height....long and lean! The doc was very pleased. We're keeping an eye on the mystery cyst on his neck. He's not sure what it is but it's not getting bigger. We got the OK to start mashing up table food for Jack to try new things outside what is available from Gerber ;-)

Thursday is the cardiologist appt. I suspect that will go well since the last one was pretty much normal.

Not much else is new. Jack was really fussy today but I think it's a combination of getting his Polio & Hep B shots AND I'm pretty sure he's almost ready to cut some more teeth (on top this time).

-Vic

2 comments:

*super dude and super dog* said...: Thank you so much for your blog! My wife and I found out last Friday that our little boy, Carter, has CDH. We are scheduled for our first appointment and level 2 ultrasound at Duke University in North Carolina on June 19th. We can only hope that Carter has as much success as little Jack. Thanks again for the hope that you have given 2 total strangers in North Carolina!!; June 4, 2008 at 10:44 PM
Fer said...: Vicki, I'm glad the appt. went well! I'm so happy that Jack is doing fine!; June 5, 2008 at 10:03 AM

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Jack's Diagnosis and Recovery

At our 19 week ultrasound Jack was diagnosed with CDH. One week later James and I went to Children's National Medical Center in Washington, D.C. for more extensive analysis. We had a fetal MRI and saw that his hernia was on the left side (the most common) and at that time his liver was 'up' or in his chest. His heart was pushed to the right in his chest and he had a normal sized right lung and a very small left lung (about 1/5 the normal size). Overall his CDH was classified as severe with a Lung to Head (LHR) ratio of 0.8. His echocardiogram showed that his heart was beating strong and there was no underlying congenital heart defect. His amnio was also normal. The prognosis was 20-50% chance of survival at birth. The struggle we faced with this diagnosis was that there is little correlation between prenatal diagnostic test results and outcome at birth. Some babies with mild defects do poorly and some with severe defects pull through and do very well. All we could do was try to be optimistic and hope and pray that Jack would be a strong baby and fight hard. On August 20, 2007 John Verner Jensen "Jack" was born by C-section at The Johns Hopkins Hospital. He weighed 6 pounds 11 ounces and was 20 inches long. Within hours of birth he was placed on ECMO (heart-lung bypass). He had a 10 day run on ECMO and went to his hernia repair surgery on this machine. He was missing 90% of his left diaphragm, had his entire stomach, spleen, and parts of his small and large intestines and liver in his chest and he required a gortex patch. Jack came out of surgery off ECMO but with the cannulas still in place until later that night. He had a really hard night after surgery and we nearly lost him. We were later told his blood gases should have been unsurvivable and that it was pure will and not medicine that saved him. After 81 days in hospital we brought Jack home breathing room air and needing only an NG (naso-gastric) feeding tube. After 27 days home he reherniated and we had to go back for emergency surgery at Johns Hopkins. His awesome surgeons literally patched him back up and after another 16 days in hospital he returned home on Dec 21, 2007 - just in time for his first Christmas. Since then Jack has tackled his eating issues and is NG-tube free! He does not require any medication. We are extremely grateful for his incredible medical team and all his friends and family for their support, kind words, thoughts and prayers.

Jack's CarePage chronicles his day-to-day journey from diagnosis to approximately 6 months old (before we started blogging). See the link below.